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Thread: first woman in epidural stimulation clinical trial

  1. #1
    Senior Member lunasicc42's Avatar
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    first woman in epidural stimulation clinical trial

    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  2. #2
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    Wow pretty amazing results! Kinda makes me want to contact them again and see if they are still recruiting. I applied as a potential subject and was contacted by them and they emailed me appointment dates, but I never replied back.

  3. #3
    Senior Member lunasicc42's Avatar
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    what was the reason that you ultimately decided not to follow-up or try to participate
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  4. #4
    https://clinicaltrials.gov/ct2/show/NCT03026816

    Inclusion Criteria:

    • 22 years of age or older
    • Able to undergo the informed consent/assent process
    • Stable, motor-complete paraplegia
    • Discrete spinal cord injury between C6 and T10
    • ASIA A or B Spinal Cord Injury Classification
    • Medically stable in the judgement of the principal investigator
    • Intact segmental reflexes below the lesion of injury
    • Greater than 1 year since initial injury and at least 6 months from any required spinal instrumentation
    • Willing to attend all scheduled appointments


    Clinical Trial Chart
    Last edited by GRAMMY; 03-08-2018 at 10:46 PM.

  5. #5
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by GRAMMY View Post
    https://clinicaltrials.gov/ct2/show/NCT03026816

    Inclusion Criteria:

    • 22 years of age or older
    • Able to undergo the informed consent/assent process
    • Stable, motor-complete paraplegia
    • Discrete spinal cord injury between C6 and T10
    • ASIA A or B Spinal Cord Injury Classification
    • Medically stable in the judgement of the principal investigator
    • Intact segmental reflexes below the lesion of injury
    • Greater than 1 year since initial injury and at least 6 months from any required spinal instrumentation
    • Willing to attend all scheduled appointments


    Clinical Trial Chart

    That clinical trial chart was just updated today so check it out peeps
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  6. #6
    Quote Originally Posted by lunasicc42 View Post
    That clinical trial chart was just updated today so check it out peeps
    I'm still updating it. There's a few more interesting things that have cropped up too.

  7. #7
    Senior Member lynnifer's Avatar
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    Allen had surgery at the end of September, during which a nerve stimulator was placed on her spinal cord and a battery pack was implanted on her left hip. After a month of recovery, Allen turned on the stimulator. She said it felt like a corset, with muscles working the abdomen.

    About a month before the symposium, doctors saw success where "everyone was in awe," Allen said.

    "We turned it on the default setting and both my big toes moved, and that is something that hasn't happened in 11 years," she said. "So it was a rather emotional time. We're hoping that big toes lead to feet, legs and knees. We'll see."

    Allen uses the stimulator, which has different settings, four hours a day. The stimulation has strengthened her core, leading to better balance, allowing her to sit up straighter, drive and ride in a car more comfortably and push herself in her wheelchair more easily. Simply, her quality of life has improved.

    Allen returns to Hennepin County Medical Center once a month where doctors record the different muscles moving.

    "And it seems that I have movement. One downside is I don't feel movement. I have a sense, an awareness, of certain muscles that I try to move," Allen said. There is no expectation that she will get the sensory feeling back.

    "They've proven it works for more people than they thought so the study is getting more attention," she said, noting the ultimate goal is that the trial will expand to the point where it can be used as a treatment option.


    I'm ecstatic that women are finally being included .. but her results so far? Meh. Moving the big toe would have been exciting but not functional. No sensation.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #8
    Quote Originally Posted by lynnifer View Post
    I'm ecstatic that women are finally being included .. but her results so far? Meh. Moving the big toe would have been exciting but not functional. No sensation.
    Not getting much back could be down to what the doctor said: "Her MRI was really concerning for us because she had very little spinal cord tissue remaining"

    Also remember this is with an off the shelf pain stimulator, not something build specifically for SCI. Those are in development, when they arrive the results should be better.

    I think everyone knows there isn't going to be a single cure, its going to be multiple things. So proving that stimulation adds a piece of it is important.

  9. #9
    Quote Originally Posted by niallel View Post

    Not getting much back could be down to what the doctor said: "Her MRI was really concerning for us because she had very little spinal cord tissue remaining"
    In most trials for SCI I've been watching and tracking over the years, her type of severe injury would have automatically excluded her from the testing.

  10. #10
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by GRAMMY View Post
    I'm still updating it. There's a few more interesting things that have cropped up too.
    good to hear. I noticed the number of trials testing e-stim have like doubled and I dunno if that is such a good thing for my particular case as I am interested in cell transplant trials more than es, cell treatment seems to offer more efficacy but it can be said that es investigations are still in the relatively early stages
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

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